confidentiality 0910

Confidentiality

Guidance

fordoctors

Patients must be able to trust doctors with their lives and health. To justify that

trust you must show respect for human life and you must:

Make the care of your patient your first concern

Protect and promote the health of patients and the public

Provide a good standard of practice and care

- Keep your professional knowledge and skills up to date

- Recognise and work within the limits of your competence

- Work with colleagues in the ways that best serve patients’ interests

Treat patients as individuals and respect their dignity

- Treat patients politely and considerately

- Respect patients’ right to confidentiality

Work in partnership with patients

- Listen to patients and respond to their concerns and preferences

- Give patients the information they want or need in a way they

can understand

- Respect patients’ right to reach decisions with you about their treatment

and care

- Support patients in caring for themselves to improve and maintain

their health

Be honest and open and act with integrity

- Act without delay if you have good reason to believe that you or a colleague

may be putting patients at risk

- Never discriminate unfairly against patients or colleagues

- Never abuse your patients’ trust in you or the public’s trust in

the profession.

You are personally accountable for your professional practice and must always be

prepared to justify your decisions and actions.

The duties of a doctor registered withthe General Medical Council

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General Medical Council 01

Confidentiality

This guidance came into effect on 12 October 2009

02 General Medical Council

Contents

Paragraph(s) Page

About this guidance 1–5 4

Principles 6–11 6

Protecting information 12–16 8

Disclosures required by law 17–23 10

Disclosures required by statute 17–20 10

Disclosures to courts or in connection

with litigation 21–23 11

Disclosing information with consent 24–35 12

Circumstances in which patients may

give implied consent to disclosure 25-32 12

Sharing information within the

healthcare team 25–29 12

Local clinical audit 30-32 13

Disclosures for which express consent

should be sought 33–35 14

The public interest 36–56 16

Disclosures in the public interest 36–39 16

Research and other secondary uses 40-50 18

Disclosures to protect the patient 51–52 21

Disclosures to protect others 53–56 21

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Paragraph(s) Page

Disclosures about patients who lack

capacity to consent 57–63 23

Disclosures when a patient may be

a victim of neglect or abuse 63 25

Sharing information with a patient’s

partner, carers, relatives or friends 64-66 26

Genetic and other shared information 67-69 27

Disclosure after a patient’s death 70-72 28

Glossary 30

Legal annex 33

Endnotes 36

Index 44

Notes 50

Confidentiality

1 Our bookletGood Medical Practice (2006) makes clear that patients have a

right to expect that information about them will be held in confidence by

their doctors. This guidance sets out the principles of confidentiality and

respect for patients’ privacy that you are expected to understand and follow.

2 You must use your judgement to apply the principles in this guidance to the

situations you face as a doctor, whether or not you hold a licence to

practise and whether or not you routinely see patients. You must be

prepared to explain and justify your decisions and actions.

3 The purpose of this guidance is to help you identify the relevant legal and

ethical considerations, and to help you make decisions that respect patients'

privacy, autonomy and choices and that also benefit the wider community

of patients and the public. If in doubt, you should seek the advice of

experienced colleagues, a Caldicott Guardian1 or equivalent, or your

professional or regulatory body.

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About this guidance

4 Supplementary guidance is available on our website explaining how these

principles apply in situations doctors often encounter or find hard to deal

with. We propose to review that supplementary guidance regularly to keep

it up to date and relevant to the problems doctors face. At the time of

publishing this core guidance, we are also publishing supplementary

guidance on:

(a) reporting concerns about patients to the DVLA

(b) disclosing records for financial and administrative purposes

(c) reporting gunshot and knife wounds

(d) disclosing information about serious communicable diseases

(e) disclosing information for insurance, employment and similar purposes

(f) disclosing information for education and training purposes

(g) responding to criticism in the press.

5 Serious or persistent failure to follow this guidance will put your

registration at risk.

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6 Confidentiality is central to trust between doctors and patients. Without

assurances about confidentiality, patients may be reluctant to seek medical

attention or to give doctors the information they need in order to provide

good care. But appropriate information sharing is essential to the efficient

provision of safe, effective care, both for the individual patient and for the

wider community of patients.

7 You should make sure that information is readily available to patients

explaining that, unless they object, their personal information may be

disclosed for the sake of their own care and for local clinical audit. Patients

usually understand that information about them has to be shared within

the healthcare team to provide their care. But it is not always clear to

patients that others who support the provision of care might also need to

have access to their personal information. And patients may not be aware

of disclosures to others for purposes other than their care, such as service

planning or medical research. You must inform patients about disclosures

for purposes they would not reasonably expect, or check that they have

already received information about such disclosures.

8 Confidentiality is an important duty, but it is not absolute. You can disclose

personal information if:

(a) it is required by law (see paragraphs 17 to 23)

(b) the patient consents – either implicitly for the sake of their own care

(see paragraphs 25 to 31) or expressly for other purposes

(see paragraphs 32 to 35)

(c) it is justified in the public interest (see paragraphs 36 to 56).

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Principles

9 When disclosing information about a patient, you must:

(a) use anonymised or coded information if practicable and if it will

serve the purpose

(b) be satisfied that the patient:

(i) has ready access to information that explains that their personal

information might be disclosed for the sake of their own care,

or for local clinical audit, and that they can object, and

(ii) has not objected

(c) get the patient’s express consent if identifiable information is to be

disclosed for purposes other than their care or local clinical audit,

unless the disclosure is required by law or can be justified in the

public interest

(d) keep disclosures to the minimum necessary, and

(e) keep up to date with, and observe, all relevant legal requirements,

including the common law and data protection legislation.2

10 When you are satisfied that information should be disclosed, you should

act promptly to disclose all relevant information.

11 You should respect, and help patients to exercise, their legal rights to:

(a) be informed about how their information will be used, and

(b) have access to, or copies of, their health records.3

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12 You must make sure that any personal information about patients that you

hold or control is effectively protected at all times against improper

disclosure. The UK health departments publish guidance on how long health

records should be kept and how they should be disposed of. You should

follow the guidance whether or not you work in the NHS.4

13 Many improper disclosures are unintentional. You should not share

identifiable information about patients where you can be overheard,

for example, in a public place or in an internet chat forum. You should not

share passwords or leave patients’ records, either on paper or on screen,

unattended or where they can be seen by other patients, unauthorised

healthcare staff, or the public.

14 Unless they have a relevant management role, doctors are not expected to

assess the security standards of large-scale computer systems provided for

their use in the NHS or in other managed healthcare environments. You

should familiarise yourself with and follow policies and procedures designed

to protect patients’ privacy where you work and when using computer

systems provided for your use. This includes policies on the use of laptops

and portable media storage devices. You must not abuse your access

privileges and must limit your access to information you have a legitimate

reason to view.

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Protecting information

15 If you are responsible for the management of patient records or other

patient information, you should make sure that they are held securely and

that any staff you manage are trained and understand their responsibilities.

You should make use of professional expertise when selecting and

developing systems to record, access and send electronic data.5 You should

make sure that administrative information, such as names and addresses,

can be accessed separately from clinical information so that sensitive

information is not displayed automatically.

16 If you are concerned about the security of personal information in premises

or systems provided for your use, you should follow the advice in Good

Medical Practice on raising concerns about patient safety, including

concerns about confidentiality and information governance.

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Disclosures required by statute

17 You must disclose information to satisfy a specific statutory requirement,

such as notification of a known or suspected case of certain infectious

diseases.6

18 Various regulatory bodies have statutory powers to access patients’ records

as part of their duties to investigate complaints, accidents or health

professionals’ fitness to practise. You should satisfy yourself that any

disclosure sought is required by law or can be justified in the public interest.

Many regulatory bodies have codes of practice governing how they will

access and use personal information.

19 Whenever practicable, you should inform patients about such disclosures,

unless that would undermine the purpose, even if their consent is not

required.

20 Patient records or other personal information may be required by the GMC

or other statutory regulators for an investigation into a healthcare

professional’s fitness to practise. If information is requested, but not

required by law, or if you are referring concerns about a health professional

to a regulatory body, you must, if practicable, seek the patient’s express

consent before disclosing personal information. If a patient refuses to

consent, or if it is not practicable to seek their consent, you should contact

the appropriate regulatory body, to help you decide whether the disclosure

can be justified in the public interest.7

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Disclosures required by law

Disclosures to courts or in connection with litigation

21 You must disclose information if ordered to do so by a judge or presiding

officer of a court. You should object to the judge or the presiding officer if

attempts are made to compel you to disclose what appears to you to be

irrelevant information, such as information about a patient’s relative who

is not involved in the proceedings.

22 You must not disclose personal information to a third party such as a

solicitor,8 police officer or officer of a court without the patient’s express

consent, unless it is required by law or can be justified in the public interest.

23 In Scotland, the system of precognition means there can be limited

disclosure of information in advance of a criminal trial, to both the Crown

and Defence, without the patient’s express consent. The disclosure must be

confined solely to the nature of injuries, the patient’s mental state, or

pre-existing conditions or health, documented by the examining doctor,

and their likely causes. If they want further information, either side may

apply to the court to take a precognition on oath. If that happens, you will

be given advance warning and you should seek legal advice about what you

can and cannot disclose.

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24 Seeking a patient’s consent to disclosure of information shows respect, and

is part of good communication between doctors and patients.

Circumstances in which patients may give impliedconsent to disclosure

Sharing information within the healthcare teamor with others providing care25 Most patients understand and accept that information must be shared

within the healthcare team in order to provide their care. You should make

sure information is readily available to patients explaining that, unless they

object, personal information about them will be shared within the

healthcare team, including administrative and other staff9 who support the

provision of their care.

26 This information can be provided in leaflets, posters, on websites, and face

to face and should be tailored to patients’ identified needs as far as

practicable. Posters might be of little assistance to patients with sight

impairment or who do not read English, for example. In reviewing the

information provided to patients, you should consider whether patients

would be surprised to learn about how their personal information is being

used and disclosed.

27 You must respect the wishes of any patient who objects to particular

personal information being shared within the healthcare team or with

others providing care, unless disclosure would be justified in the public

interest. If a patient objects to a disclosure that you consider essential to

the provision of safe care, you should explain that you cannot refer them

or otherwise arrange for their treatment without also disclosing that

information.

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Disclosing information with consent

28 You must make sure that anyone you disclose personal information to

understands that you are giving it to them in confidence, which they must

respect. All staff members receiving personal information in order to provide

or support care are bound by a legal duty of confidence, whether or not

they have contractual or professional obligations to protect confidentiality.

29 Circumstances may arise in which a patient cannot be informed about the

disclosure of information, for example, in a medical emergency. In such a

case you should pass relevant information promptly to those providing the

patient’s care. If and when the patient is capable of understanding, you

should inform them how their personal information was disclosed if it was

in a way they would not reasonably expect.

Local clinical audit30 All doctors in clinical practice have a duty to participate in clinical audit

and to contribute to National Confidential Inquiries.10 If an audit is to be

undertaken by the team that provided care, or those working to support

them, such as clinical audit staff, you may disclose identifiable information,

provided you are satisfied that the patient:

(a) has ready access to information that explains that their personal

information may be disclosed for local clinical audit, and that they

have the right to object, and

(b) has not objected.

31 If a patient does object, you should explain why the information is needed

and how this may benefit their own, and others’ care. If it is not possible to

provide safe care without disclosing information for audit, you should

explain this to the patient and the options open to them.

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32 If clinical audit is to be undertaken, but not by the team that provided care

or those who support them, the information should be anonymised or

coded. If this is not practicable, or if identifiable information is essential to

the audit, you should disclose the information only if you have the patient’s

express consent. (See the guidance on Research and other secondary uses in

paragraphs 40 to 50.)

Disclosures for which express consent should be sought

33 As a general rule, you should seek a patient’s express consent before

disclosing identifiable information for purposes other than the provision

of their care or local clinical audit, such as financial audit and insurance or

benefits claims.11

34 If you are asked to provide information to third parties, such as a patient’s

insurer or employer or a government department or an agency assessing a

claimant’s entitlement to benefits, either following an examination or from

existing records, you should:

(a) be satisfied that the patient has sufficient information about the scope,

purpose and likely consequences of the examination and disclosure,

and the fact that relevant information cannot be concealed or withheld

(b) obtain or have seen written consent to the disclosure from the patient

or a person properly authorised to act on the patient’s behalf; you may

accept an assurance from an officer of a government department or

agency or a registered health professional acting on their behalf that

the patient or a person properly authorised to act on their behalf

has consented

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(c) only disclose factual information you can substantiate, presented in an

unbiased manner, relevant to the request; so you should not usually

disclose the whole record, although it may be relevant to some benefits

paid by government departments and to other assessments of patients’

entitlement to pensions or other health-related benefits, and

(d) offer to show your patient, or give them a copy of, any report you

write about them for employment or insurance purposes before it is

sent, unless:

(i) they have already indicated they do not wish to see it

(ii) disclosure would be likely to cause serious harm to the patient

or anyone else

(iii) disclosure would be likely to reveal information about another

person who does not consent.12

35 If a patient refuses consent, or if it is not practicable to get their consent,

information can still be disclosed if it is required by law or can be justified

in the public interest (see paragraphs 36 to 56). If the purpose is covered

by a regulation made under section 251 of the NHS Act 2006, disclosures

can also be made without a patient’s consent, but not if the patient

has objected.13

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Disclosures in the public interest

36 There is a clear public good in having a confidential medical service. The

fact that people are encouraged to seek advice and treatment, including

for communicable diseases, benefits society as a whole as well as the

individual. Confidential medical care is recognised in law as being in the

public interest. However, there can also be a public interest in disclosing

information: to protect individuals or society from risks of serious harm,

such as serious communicable diseases or serious crime; or to enable

medical research, education or other secondary uses of information that

will benefit society over time.

37 Personal information may, therefore, be disclosed in the public interest,

without patients’ consent, and in exceptional cases where patients have

withheld consent, if the benefits to an individual or to society of the

disclosure outweigh both the public and the patient’s interest in keeping

the information confidential. You must weigh the harms that are likely to

arise from non-disclosure of information against the possible harm, both to

the patient and to the overall trust between doctors and patients, arising

from the release of that information.

38 Before considering whether a disclosure of personal information would be

justified in the public interest, you must be satisfied that identifiable

information is necessary for the purpose, or that it is not reasonably

practicable to anonymise or code it. In such cases, you should still seek

the patient’s consent unless it is not practicable to do so, for example,

because:

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The public interest

(a) the patient is not competent to give consent, in which case you should

consult the patient’s welfare attorney, court-appointed deputy,

guardian or the patient’s relatives, friends or carers (see paragraphs

57 to 63)

(b) you have reason to believe that seeking consent would put you or

others at risk of serious harm

(c) seeking consent would be likely to undermine the purpose of the

disclosure, for example, by prejudicing the prevention or detection of

serious crime, or

(d) action must be taken quickly, for example, in the detection or control of

outbreaks of some communicable diseases, and there is insufficient

time to contact the patient.

39 You should inform the patient that a disclosure will be made in the public

interest, even if you have not sought consent, unless to do so is

impracticable, would put you or others at risk of serious harm, or would

prejudice the purpose of the disclosure. You must document in the patient’s

record your reasons for disclosing information without consent and any

steps you have taken to seek the patient’s consent, to inform them about

the disclosure, or your reasons for not doing so.

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Research and other secondary uses

40 Research, epidemiology, public health surveillance, health service planning,

and education and training are among the important secondary uses made

of patient information. Each of these uses can serve important public

interests.14

41 For many secondary uses, it will be sufficient and practicable to disclose

only anonymised or coded information. When identifiable information is

needed, or it is not practicable to remove identifiable information, it will

often be perfectly practicable to get patients’ express consent.

42 You may disclose identifiable information without consent if it is required

by law, if it is approved under section 251 of the NHS Act 2006,15 or if it can

be justified in the public interest and it is either:

(a) necessary to use identifiable information, or

(b) not practicable to anonymise or code the information

and, in either case, not practicable16 to seek consent (or efforts to seek

consent have been unsuccessful).17

43 In considering whether it is practicable to seek consent you must take

account of:

(a) the age of records and the likely traceability of patients

(b) the number of records, and

(c) the possibility of introducing bias because of a low response rate or

because particular groups of patients refuse, or do not respond to,

requests to use their information.

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44 When considering whether the public interest in disclosures for secondary

uses outweighs patients’ and the public interest in keeping the information

confidential, you must consider:

(a) the nature of the information to be disclosed

(b) what use will be made of the information

(c) how many people will have access to the information

(d) the confidentiality and security arrangements in place to protect the

information from further disclosure

(e) the advice of a Caldicott Guardian or similar expert adviser, who is

not directly connected with the use for which disclosure is being

considered, and

(f) the potential for distress or harm to patients.

45 When considering applications for support under section 251 of the NHS

Act 2006 in England and Wales, the National Information Governance

Board considers:

(a) the feasibility of doing the research or other activity with patients’

consent or by using anonymised or coded information, and

(b) whether the use of identifiable information would benefit patients or

the public sufficiently to outweigh patients’ right to privacy.18

46 The Privacy Advisory Committee in Northern Ireland can advise on some of

the same considerations; but it has no statutory powers and so cannot give

lawful authority to disclosures of identifiable information without consent.

In the event of a complaint or challenge, its advice on best practice might

play an important part in any assessment of the propriety of a disclosure.

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47 The Privacy Advisory Committee in Scotland performs a different role, and

doctors there should seek the advice of Caldicott Guardians, defence

organisations or professional bodies if they are unsure about whether

disclosures of identifiable information for secondary uses can be justified

in the public interest.

48 It might not be practicable for the healthcare team, or those who usually

support them, to anonymise or code information or to seek patients’

express consent:

(a) for the disclosure of identifiable information for important secondary

uses, or

(b) so that suitable patients can be recruited to clinical trials or other

approved research projects.

49 If that is the case:

(a) identifiable information may be sent to a ‘safe haven’, where they exist

and have the capabilities and are otherwise suitable to process the

information (including anonymising or coding it) and to manage the

disclosure of information for secondary uses or, if that is not

practicable19

(b) the task of anonymising or coding the information or seeking patients’

consent to disclosure can be delegated20 to someone incorporated into

the healthcare team on a temporary basis and bound by legal and

contractual obligations of confidentiality.

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50 You should only disclose identifiable information for research if that

research is approved by a Research Ethics Committee. You should alert

Research Ethics Committees to disclosures of identifiable information

without consent when applying for approval for research projects.21

Disclosures to protect the patient

51 It may be appropriate to encourage patients to consent to disclosures you

consider necessary for their protection, and to warn them of the risks of

refusing to consent; but you should usually abide by a competent adult

patient’s refusal to consent to disclosure, even if their decision leaves them,

but nobody else, at risk of serious harm.22 You should do your best to

provide patients with the information and support they need to make

decisions in their own interests, for example, by arranging contact with

agencies that support victims of domestic violence.

52 Disclosure without consent may be justified if it is not practicable to seek

a patient’s consent. See paragraph 38 for examples, and paragraph 63 for

guidance on disclosures to protect a patient who lacks capacity to consent.

Disclosures to protect others

53 Disclosure of personal information about a patient without consent may

be justified in the public interest if failure to disclose may expose others

to a risk of death or serious harm. You should still seek the patient’s consent

to disclosure if practicable and consider any reasons given for refusal.

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54 Such a situation might arise, for example, when a disclosure would be likely

to assist in the prevention, detection or prosecution of serious crime,23

especially crimes against the person. When victims of violence refuse police

assistance, disclosure may still be justified if others remain at risk, for

example, from someone who is prepared to use weapons, or from domestic

violence when children or others may be at risk.

55 If a patient’s refusal to consent to disclosure leaves others exposed to a risk

so serious that it outweighs the patient’s and the public interest in

maintaining confidentiality, or if it is not practicable or safe to seek the

patient’s consent, you should disclose information promptly to an

appropriate person or authority. You should inform the patient before

disclosing the information, if practicable and safe, even if you intend to

disclose without their consent.

56 You should participate in procedures set up to protect the public from

violent and sex offenders. You should co-operate with requests for relevant

information about patients who may pose a risk of serious harm to others.24

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57 There is advice on assessing a patient’s mental capacity in our guidance

Consent: patients and doctors making decisions together and in the Adults

with Incapacity (Scotland) Act 2000 andMental Capacity Act 2005 codes

of practice. There is no specific mental capacity legislation for Northern

Ireland.

58 For advice in relation to children and young people, see our guidance

0-18 years: guidance for all doctors.

59 When making decisions about whether to disclose information about a

patient who lacks capacity, you must:

(a) make the care of the patient your first concern

(b) respect the patient’s dignity and privacy, and

(c) support and encourage the patient to be involved, as far as they want

and are able, in decisions about disclosure of their personal information.

60 You must also consider:

(a) whether the patient's lack of capacity is permanent or temporary and,

if temporary, whether the decision to disclose could reasonably wait

until they regain capacity

(b) any evidence of the patient's previously expressed preferences

(c) the views of anyone the patient asks you to consult, or who has legal

authority to make a decision on their behalf, or has been appointed to

represent them

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Disclosures about patients who lackcapacity to consent

(d) the views of people close to the patient on the patient’s preferences,

feelings, beliefs and values, and whether they consider the proposed

disclosure to be in the patient's best interests, and

(e) what you and the rest of the healthcare team know about the patient's

wishes, feelings, beliefs and values.

61 If a patient who lacks capacity asks you not to disclose personal information

about their condition or treatment, you should try to persuade them to

allow an appropriate person to be involved in the consultation.25 If they

refuse, and you are convinced that it is essential in their best interests, you

may disclose relevant information to an appropriate person or authority.

In such a case you should tell the patient before disclosing the information

and, if appropriate, seek and carefully consider the views of an advocate or

carer. You should document in the patient’s record your discussions and the

reasons for deciding to disclose the information.

62 You may need to share personal information with a patient’s relatives,

friends or carers to enable you to assess the patient’s best interests. But

that does not mean they have a general right of access to the patient’s

records or to have irrelevant information about, for example, the patient’s

past healthcare. You should also share relevant personal information with

anyone who is authorised to make decisions on behalf of, or who is

appointed to support and represent, a mentally incapacitated patient.26

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Disclosures when a patient may be a victimof neglect or abuse

63 If you believe that a patient may be a victim of neglect or physical, sexual

or emotional abuse, and that they lack capacity to consent to disclosure,

you must give information promptly to an appropriate responsible person

or authority, if you believe that the disclosure is in the patient’s best

interests or necessary to protect others from a risk of serious harm. If, for

any reason, you believe that disclosure of information is not in the best

interests of a neglected or abused patient, you should discuss the issues

with an experienced colleague. If you decide not to disclose information,

you should document in the patient’s record your discussions and the

reasons for deciding not to disclose. You should be prepared to justify

your decision.

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64 You should establish with the patient what information they want you to

share, who with, and in what circumstances. This will be particularly

important if the patient has fluctuating or diminished capacity or is likely

to lose capacity, even temporarily. Early discussions of this nature can help

to avoid disclosures that patients would object to. They can also help to

avoid misunderstandings with, or causing offence to, anyone the patient

would want information to be shared with.

65 If a patient lacks capacity, you should share relevant information in

accordance with the advice in paragraphs 57 to 63. Unless they indicate

otherwise, it is reasonable to assume that patients would want those

closest to them to be kept informed of their general condition and

prognosis.

66 If anyone close to the patient wants to discuss their concerns about the

patient’s health, you should make it clear to them that, while it is not a

breach of confidentiality to listen to their concerns, you cannot guarantee

that you will not tell the patient about the conversation. You might need

to share with a patient information you have received from others, for

example, if it has influenced your assessment and treatment of the patient.27

You should not refuse to listen to a patient’s partner, carers or others on

the basis of confidentiality. Their views or the information they provide

might be helpful in your care of the patient. You will, though, need to

consider whether your patient would consider you listening to the concerns

of others about your patient’s health or care to be a breach of trust,

particularly if they have asked you not to listen to particular people.28

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Sharing information with a patient’spartner, carers, relatives or friends

67 Genetic and some other information about your patient might at the same

time also be information about others the patient shares genetic or other

links with. The diagnosis of an illness in the patient might, for example,

point to the certainty or likelihood of the same illness in a blood relative.

68 Most patients will readily share information about their own health with

their children and other relatives, particularly if they are advised that it

might help those relatives to:

(a) get prophylaxis or other preventative treatments or interventions

(b) make use of increased surveillance or other investigations, or

(c) prepare for potential health problems.29

69 However, a patient might refuse to consent to the disclosure of information

that would benefit others, for example, where family relationships have

broken down, or if their natural children have been adopted. In these

circumstances, disclosure might still be justified in the public interest

(see paragraphs 36 to 56). If a patient refuses consent to disclosure, you

will need to balance your duty to make the care of your patient your first

concern against your duty to help protect the other person from serious

harm. If practicable, you should not disclose the patient’s identity in

contacting and advising others of the risks they face.

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Genetic and other shared information

70 Your duty of confidentiality continues after a patient has died.30 Whether

and what personal information may be disclosed after a patient’s death will

depend on the circumstances. If the patient had asked for information to

remain confidential, you should usually respect their wishes. If you are

unaware of any instructions from the patient, when you are considering

requests for information you should take into account:

(a) whether the disclosure of information is likely to cause distress to,

or be of benefit to, the patient’s partner or family31

(b) whether the disclosure will also disclose information about the patient’s

family or anyone else

(c) whether the information is already public knowledge or can be

anonymised or coded, and

(d) the purpose of the disclosure.

71 There are circumstances in which you should disclose relevant information

about a patient who has died, for example:

(a) to help a coroner, procurator fiscal or other similar officer with an

inquest or fatal accident inquiry32

(b) when disclosure is required by law, is authorised under section 251 of

the NHS Act 2006, or is justified in the public interest, such as for

education or research

(c) for National Confidential Inquiries or for local clinical audit

(d) on death certificates, which you must complete honestly and fully

(e) for public health surveillance, in which case the information should be

anonymised or coded, unless that would defeat the purpose

(f) when a parent asks for information about the circumstances and

causes of a child’s death

Confidentiality


Disclosure after a patient’s death

(g) when a partner, close relative or friend asks for information about the

circumstances of an adult’s death, and you have no reason to believe

that the patient would have objected to such a disclosure, and

(h) when a person has a right of access to records under the Access to

Health Records Act 1990 or Access to Health Records (Northern

Ireland)Order 1993.33

72 Archived records relating to deceased patients remain subject to a duty of

confidentiality, although the potential for disclosing information about,

or causing distress to, surviving relatives or damaging the public’s trust will

diminish over time.34

Confidentiality


This glossary defines the terms used in this document. These definitions have no

wider or legal significance.

Information

Personal Information about people which doctors learn in a professional

information capacity and from which individuals can be identified.

Anonymised Information from which individuals cannot reasonably be identified.

information Names, addresses, full postcodes or identification numbers, alone or

together or in conjunction with any other information held by or

available to the recipient, can be used to identify patients.

Coded Also known as pseudonymised information. Information from which

information individuals cannot be identified by the recipient, but which enables

information about different patients to be distinguished or to link

information about the same patients over time (for example, to

identify drug side effects). A ‘key’ might be retained by the person

or service which coded the information so that it can be

reconnected with the patient. (See Anonymised information above.)

Identifiable Information from which a patient can be identified. Their name,

information address and full postcode will identify a patient; combinations of

information may also do so, even if their name and address are not

included. Information consisting of small numbers and rare

conditions might also lead to the identification of an individual.

Compare with Anonymised and Coded information.

Confidentiality


Glossary

Consent

Consent Agreement to an action based on knowledge of what the action

involves and its likely consequences.

Express Consent which is expressed orally or in writing. Also known as

consent explicit consent.

Implied Consent that can be inferred if the patient has been informed that

consent information is to be disclosed, the purpose and extent of the

disclosure, and that they have a right to object, but have not

objected.

Other terms

Clinical Evaluation of clinical performance against standards or through

audit comparative analysis, to inform the management of services.

Disclosure The provision or passing of information about a patient to anyone

other than the patient, regardless of the purpose. Sharing

information within healthcare teams is a form of disclosure, as is

providing personal information about a patient to the police.

Healthcare The healthcare team comprises the people providing clinical

team services for a patient, and the administrative and other staff who

support the provision of their care. See paragraph 25 and Endnote

9 for more examples of who might form part of the healthcare

team.

Confidentiality


Public The interests of the community as a whole, or a group within the

interest community or individuals. Paragraphs 36 and 37 give an

explanation of the balancing exercise required to decide if disclosure

might be justified in the public interest.

Confidentiality


1 Various bodies regulating healthcare providers and professionals have

statutory powers to require the disclosure of information, including personal

information about patients. The following represents only a selection of

these bodies, a summary of their most relevant powers, and reference to

codes they publish about how they use their powers.

2 There are a large number of other Acts that provide for some form of access

to information, which may include personal information about patients, for

purposes as diverse as the prevention of terrorism and the investigation of

road or rail accidents.

3 If you are unsure about the legal basis for a request for information, you

should ask for clarification from the person making the request and, if

necessary, seek independent legal advice.

Regulation of healthcare providers and professionals

4 The Care Quality Commission has powers of inspection, entry and to

require documents and information under the Health and Social Care Act

2008. Sections 76 to 79 govern the Commission’s use and disclosure of

confidential personal information. Section 80 requires it to consult on and

publish a code of practice on how it obtains, handles, uses and discloses

confidential personal information.

5 Healthcare InspectorateWales has powers under the Health and Social

Care (Community Health and Standards) Act 2003 to access patients’

personal information.

Confidentiality


Legal annex

6 The Scottish Care Commission has similar powers in relation to registered

independent healthcare providers under section 25 of the Regulation of

Care (Scotland) Act 2001.

7 The Regulation and Quality Improvement Authority has powers under

sections 41 and 42 of the Health and Personal Social Services (Quality,

Improvement and Regulation) (Northern Ireland)Order 2003 to enter

establishments and agencies and Health and Social Services bodies or

providers’ premises and inspect and take copies of records, subject to the

protection of confidential information provided for in section 43.

8 The NHS Counter Fraud Service has powers under the NHS Act 2006 and

NHS (Wales) Act 2006 to require the production of documents to prevent,

detect and prosecute fraud in the NHS. The Department of Health (England)

and Welsh Assembly Government have published codes of practice for the

use of these powers.

9 Section 35A of the Medical Act 1983 gives the GMC power to require

disclosure of information and documentation relevant to the discharge of

our fitness to practise functions, provided such disclosure is not prohibited

by other legislation.

10 The Parliamentary and Health Service Ombudsman, Northern Ireland

Ombudsman, Public Service Ombudsman for Wales and the Scottish

Public Services Ombudsman have statutory powers similar to the High

Court or Court of Session to require the production of documents and the

attendance and examination of witnesses for the purposes of investigations

about the health bodies that fall within their remits.

Confidentiality


Court orders

11 The courts, both civil and criminal, have powers to order disclosure of

information in various circumstances. The basis on which disclosure is being

ordered should be explained to you; and the patient whose personal

information is sought should be told about the order, unless that is not

practicable or would undermine the purpose for which disclosure is sought.

Confidentiality


1 Caldicott Guardians are senior people in NHS, local authority social care,

and partner organisations, who are responsible for protecting the

confidentiality of patient information and enabling appropriate information

sharing.

2 Doctors working in a managed environment will do this largely by

understanding and following corporate information governance and

confidentiality policies.

3 The Data Protection Act 1998 provides for exceptions in some circumstances

and allows charges to be made. You can find out more about this in

guidance from the Information Commissioner’s Office and the UK health

departments.

4 The NHSCode of Practice: Records Management (Department of Health,

2006), Records Management: NHSCode of Practice (Scotland) (Scottish

Government, 2008), Welsh Health Circular (2000) 71: For The Record

(National Assembly for Wales) and Good Management, Good Records

(Department of Health, Social Services and Public Safety, 2005) all include

schedules of minimum retention periods for different types of records. You

should also consider any legal requirement of specialty-specific guidance

that affects the period for which you should keep records. You should not

keep records for longer than necessary.

Confidentiality


Endnotes

5 You should follow the technical guidance of the Information Commissioner’s

Office. The ISO 27001 Security Management Standard and the Code of

Practice for Information Security Management in ISO 27002 give more

detailed guidance, as does the Department of Health’s technical guidance

for NHS organisations. NHS Connecting for Health publishes an Information

Governance Toolkit for NHS organisations. It aims to bring together, in a

single framework, all the requirements, standards and best practice on

handling personal information, allowing implementation of Department of

Health guidance and compliance with the law.

6 Different diseases are notifiable in different UK countries and the reporting

arrangements differ. You can get advice from the Health Protection Agency

in England, Public Health Wales, Communicable Disease Surveillance Centre

in Northern Ireland and Health Protection Scotland.

7 See the legal annex (page 33) for more information about the statutory

powers of bodies regulating the provision of healthcare and healthcare

professionals to require disclosure of information, and about other legal

duties to disclose.

8 You may disclose information to your own legal adviser in order to take

their advice.

9 Others who might form part of the healthcare team, but with whom

patients might not expect information to be shared, include prescribing

advisers who review patients’ medicine needs to improve safety, efficacy

and efficiency in doctors’ prescribing.

10 See Good Medical Practice (GMC, 2006), paragraphs 14 and 41.

Confidentiality


11 See the supplementary guidance on Disclosing records for financial and

administrative purposes and Disclosing information for insurance, employment

and similar purposes. Disclosure necessary to respond to matters raised on a

patient’s behalf by a Member of Parliament may be made without seeking

the patient’s express consent; you should still check with the patient if you

think they would not reasonably expect the information to be disclosed. See

the Information Commissioner’s technical guidance note on the Data

Protection (Processing of Sensitive Personal Data) (Elected Representatives)

Order 2002.

12 If any of the exceptions apply, you should still disclose as much of the

report as you can. The Department for Work and Pensions publishes advice

about reports for benefits purposes.

See www.dwp.gov.uk/healthcare-professional/guidance

13 Section 251 of the NHS Act 2006 re-enacts section 60 of the Health and

Social Care Act 2001. Approval under section 251 of the NHS Act 2006

allows for disclosure despite the common law requirement to obtain

consent, but would not usually authorise disclosure to which a patient

had objected; disclosure might still be justified in the public interest. See

also the guidance in paragraphs 46 and 47 on the roles of the privacy

advisory committees in Scotland and Northern Ireland.

14 See the supplementary guidance on Disclosing records for financial and

administrative purposes, such as QOF reviews, and Disclosing information

for education and training purposes. The Medical Research Council publishes

a toolkit of practical advice on the legal and good practice requirements of

using personal information in research.

See www.dt-toolkit.ac.uk/home.cfm

Confidentiality


15 Section 251 of the NHS Act 2006 applies only to England and Wales, where

doctors should seek and abide by the independent advice of the Ethics and

Confidentiality Committee of the National Information Governance Board.

16 You should consider whether the work needed to anonymise or code the

information or to seek patients’ consent is reasonably practicable in all the

circumstances. Only if unreasonable effort is required should you go on to

consider whether disclosure of identifiable information is justified in the

public interest.

17 If it is not practicable to anonymise or code the information or to seek or

obtain patients’ consent without unreasonable effort, and the likelihood of

distress or harm to patients is negligible, disclosure for an important

secondary purpose may be proportionate. You should respect patients’

objections to disclosure.

18 Disclosures covered by a regulation are not in breach of the common law

duty of confidentiality.

19 The NHS Information Centre is working towards the establishment of the

structures and guidance (and seeking approval under section 251 of the NHS

Act 2006) for safe havens in England. The Information Services Division

manages identifiable information about patients for many secondary uses

in Scotland.

Confidentiality


20 Delegation involves asking a colleague to anonymise or code the

information or seek patients’ consent. Although you will not be accountable

for the actions of those you delegate to, you will still be accountable for

your decision to delegate. You must be satisfied that the person you

delegate to is trained and understands their responsibilities and the

consequences of breaching confidentiality. See paragraphs 12 to 16 on

protecting information and the management of records.

21 You might seek Research Ethics Committees’ advice on the ethics of

disclosing and using identifiable information for research purposes.

However, they cannot authorise unconsented disclosure or determine

if disclosure is justified in the public interest.

22 The Adult Support and Protection (Scotland) Act 2007 requires health

boards in Scotland to report to local authorities if they know or believe that

an adult is at risk of harm (but not necessarily incapacitated) and that

action needs to be taken to protect them. The Act also requires certain

public bodies and office-holders to co-operate with local authorities making

inquiries about adults at risk and includes powers to examine health records

for related purposes.

23 There is no agreed definition of ‘serious crime’. Confidentiality: NHSCode of

Practice (Department of Health, 2003) gives some examples of serious

crime (including murder, manslaughter, rape and child abuse; serious harm

to the security of the state and public order and ‘crimes that involve

substantial financial gain or loss’ are mentioned in the same category).

It also gives examples of crimes that are not usually serious enough to

warrant disclosure without consent (including theft, fraud, and damage to

property where loss or damage is less substantial).

Confidentiality


24 You should consider the assessment of risk posed by patients made by other

professionals and by groups established for that purpose, but you must

make your own assessment and decision as to whether disclosure is

justified. Your assessment of risk is a matter of professional judgement in

which an offender’s past behaviour will be a factor. The Royal College of

Psychiatrists publishes guidance for psychiatrists about sharing information

in the context of public protection, including participation in Multi-Agency

Public Protection Arrangements (MAPPA) and panels.

25 In some cases disclosure will be required or necessary, for example, under

the provisions of mental health and mental capacity legislation.

26 This might be a welfare attorney, a court-appointed deputy or guardian or

an Independent Mental Capacity Advocate. See the Adults with Incapacity

(Scotland) Act 2000 and Mental Capacity Act 2005 and their respective

codes of practice. There is no specific mental capacity legislation for

Northern Ireland, where the common law duty to act in incapacitated

patients’ best interests endures. Independent Mental Health Advocates

should also be provided with the information listed in section 130B of the

Mental Health Act 1983.

27 Section 7 of the Data Protection Act 1998 gives patients the right to have

access to their personal information; but there are some exceptions. For

example, you do not have to supply a patient with information about

another person or that identifies another person as the source of the

information, unless that other person consents or it is reasonable in the

circumstances to supply the information without their consent. See the

Information Commissioner’s technical guidance note on Dealing with

subject access requests involving other people’s information.

Confidentiality


28 The Princess Royal Trust for Carers publishes information on good practice

for primary care, mental health and hospital-based professionals,

highlighting carers’ need for information to perform their roles.

29 For more information see Consent and confidentiality in genetic practice:

Guidance on genetic testing and sharing of genetic information – A report of

the JointCommittee onMedicalGenetics (Royal College of Physicians, 2006).

30 There is an obvious ethical obligation. There may also be a legal obligation:

see Lewis v Secretary of State for Health [2008] EWHC 2196. Section 38 of

the Freedom of Information (Scotland) Act 2002 includes a deceased

person’s medical records within the definition of personal information,

which is exempt from the general entitlement to information.

31 The permission of a surviving relative or next of kin is not required for, and

does not authorise, disclosure of confidential information, although the

views of those who were close to the patient may help you decide if

disclosure is appropriate.

32 See paragraph 69 of Good Medical Practice (GMC, 2006).

Confidentiality


33 Namely, a deceased patient’s personal representative and any person who

may have a claim arising out of a patient’s death. This is not a general right,

and access should be limited to information of relevance to the claim.

Access should be limited or refused if there is evidence that the patient

would have expected that the information would not be disclosed to the

applicant, if disclosure is likely to cause serious harm to anyone else, or if it

would also disclose information about a third party (other than a healthcare

professional involved in the deceased person’s care) who does not consent.

Access must be refused to records that contain a note, made at the patient’s

request, that they did not wish access to be given on an application under

the Access to Health Records Act 1990.

34 You should contact your organisation’s approved place of deposit or The

National Archives, the Public Record Office of Northern Ireland or the

National Archives of Scotland for further advice about storage of, and

access to, archives of records of ongoing research or historical value. Health

records of deceased patients are exempt from the Freedom of Information

(Scotland) Act 2002.

Confidentiality


Note: Numbers refer to paragraphs.

A

abuse, disclosure of 63

Access to Health Records Act 1990 71h

Access to Health Records (Northern

Ireland)Order 1993 71h

Adult Support and Protection (Scotland)

Act 2007 endnote 22

Adults with Incapacity (Scotland) Act,

2000 57, endnote 26

anonymised or coded information 9a,

38, 41, 45a, 48, endnotes 16, 17

delegation of process 49b

archives 72

audit

clinical audit 7, 30–32

financial audit 33

B

benefit claims 33, 34c

C

Caldicott Guardians 3, 44e, 47,

endnote 1

capacity endnotes 25, 26

disclosure when patient lacks

capacity to consent 38a, 57–63

Care Quality Commission legal annex 4

carers, sharing information with 62,

64–66

children

capacity and disclosure 58

information to parents on death of

71f

clinical audit 7, 30–32

coded, see anonymised or coded

information

colleagues, seeking advice from 3, 63

common law of confidentiality 9e

communicable diseases 4d, 36

competence, see capacity

computer systems 13, 14

Confidentiality: NHSCode of Practice

endnote 23

Consent: patients and doctors making

decisions together 57

consent

disclosure with 24–35

disclosure without 36–56

express 33–35

seeking 38, 43

coroner 71a

courts 21–23, legal

annex 11

Confidentiality


Index

crime

definition endnote 23

disclosure in public interest for 54

if seeking consent would undermine

purpose of disclosure 38c

reporting of gunshot and knife

wounds 4c

sex offenders 56

violent offenders 56

D

Data Protection Act 1998 endnote 3

data protection legislation 9e

death, disclosure after 70–72

death certificates 71d

delegation endnote 20

disclosure

about patients who lack capacity to

consent 57–63

after death 70–72

for research 40–50

in public interest 8c, 36–56

informing the patient of 19

minimising 9d

of genetic information 67–69

required by law 8a, 17–23 and legal

annex

to courts or in litigation 21–23 and

legal annex 11

to family members 64–66

to protect others 53–56

to protect patient 51, 52, 63

under precognition 23

with consent 8b, 24–35

disposal of health records 12

domestic violence 51, 54

DVLA, reporting concerns to 4a

E

education and training 4f, 36, 40

electronic health records, see computer

systems

emergency 29

employment

disclosure for reasons of 4e, 34

epidemiology 40

F

family members, sharing information

with 62, 64–66

fatal accident inquiry 71a

Confidentiality


finance

disclosure for 4b, endnotes 11, 14

financial audit 33

fitness to practise 18, 20

friends, see family members

G

General Medical Council legal annex 9

genetic information 67–69

Good Management, Good Records

endnote 4

Good Medical Practice 2, 16,

endnote 10

government departments,

consent for disclosure to 34

gunshot wounds, reporting of 4c

H

Health and Personal Social Services

(Quality, Improvements and

Regulation) (Northern Ireland)Order

2003 legal annex 7

Health and Social Care Act 2008 legal

annex 4

Health and Social Care (Community

Health and Standards) Act 2003

legal annex 5

Healthcare Inspectorate Wales legal

annex 5

healthcare team

sharing information with 7, 25–29

health records, see patient records

health service planning 40

I

inquest 71a

insurers, disclosure to 4e, 33, 34,

endnote 11

internet 13

ISO 27001 Security Management

Standard endnote 5

J

judges 21

K

knife wounds, reporting of 4c

L

laptops 14

legislation legal annex 1–11

disclosures required by 17–23

keeping up to date with 9e

Confidentiality


litigation 21–23

M

media, responding to criticism in

press 4g

Medical Act 1983 legal annex 9

memory sticks, see portable media

storage devices

Mental Capacity Act 2005 endnote 26

N

National Confidential Inquiries 30, 71c

National Information Governance

Board 45

neglect, disclosure of 63

NHS Act 2006 legal annex 8

NHS Act 2006 section 251 35, 42, 45,

71b, endnotes 13, 15, 19

NHSCode of Practice: Records

Management endnote 4

NHS Counter Fraud Service legal

annex 8

NHS (Wales) Act 2006 legal annex 8

Northern Ireland, Privacy Advisory

Committee 46

notifiable diseases endnote 6

O

ombudsmen legal annex 10

P

partners, see family members

passwords 13

patients

access to information 9b(i)

knowledge of information sharing

25, 26

legal rights 11

provision of information to 26, 34

patient records,

archived 72

disposal 12

documenting disclosure in public

interest 39

documenting discussions on neglect

and abuse 63

length of retention 12

management of 15

pensions 34c

personal information

disclosure for care 7, 25–29

disclosure for clinical audit 7, 30–32

disclosure in public interest 8c,

36–56

disclosure required by law 8a, 17–23

Confidentiality


disclosure with consent 8b, 24–35

protection of 12–16

police 22

portable media storage devices 14

precognition 23

press, responding to criticism in 4g

privacy 2, 59b

Privacy Advisory Committee

Northern Ireland 46

Scotland 47

procurator fiscal 71a

protection of information 12–16

public health surveillance 40, 71e

public interest

disclosure in 36–56

disclosure to regulatory body 20

in cases of serious crime 54

informing patient of disclosure 39

risk of death or serious harm 53

secondary uses of patient

information 40–50

R

raising concerns 16

records, see patient records

records management endnote 4

Records Management: NHSCode of

Practice (Scotland) endnote 4

referral, if patient objects to disclosure

27

Regulation and Quality Improvement

Authority legal annex 7

Regulation of Care (Scotland) Act 2001

legal annex 6

regulatory bodies with statutory powers

18, 20, legal annex 4–10

relatives, see family members

research 36, 40–50

retention of health record 12

risk

judgement of endnote 24

to others 53–56

to patient 51, 52, 63

S

safe havens 49a

Scotland,

Privacy Advisory Committee 47

precognition 23

Scottish Care Commission legal annex

6

security standards of computer systems

14–16

Confidentiality


serious harm 51–56, 63

service planning, disclosure for 7

sex offenders 56

solicitors 22

staff, legal duty of confidentiality 28

T

terrorism legal annex 2

third parties

disclosure to 22

express consent for disclosure to 34

to protect 53–56

training (and education) 4f, 40,

endnote 14

trust 6, 66

V

victims

disclosure to protect patients at risk

of neglect or abuse 63

domestic violence 51, 54

violence

domestic 51, 54

if victim refuses police help 54

violent offenders 56

W

weapons, disclosure in public interest

54

Welsh Health Circular (2000) 71: For the

Record endnote 4

Y

young people, capacity and disclosure

58

Confidentiality


Confidentiality


Notes

Confidentiality


London

Regent’s Place, 350 Euston Road, London NW1 3JN

Manchester

3 Hardman Street, Manchester M3 3AW

Scotland

5th Floor, The Tun, 4 Jackson’s Entry, Holyrood Road, Edinburgh EH8 8PJ

Wales

Regus House, Falcon Drive, Cardiff Bay CF10 4RU

Northern Ireland

9th Floor, Bedford House, 16-22 Bedford Street, Belfast BT2 7FD

Telephone: 0161 923 6602

Email: [email protected]

Website: www.gmc-uk.org

Outside the UK telephone: +44(0)161 923 6602

The GMC is a charity registered in England and Wales (1089278) and Scotland (SC037750)

© 2009 General Medical Council

All rights reserved. No part of this publication may be reproduced, stored in a retrieval

system, or transmitted, in any form or by any means, electronic, mechanical, photocopying,

recording or otherwise without the prior permission of the copyright owner.

First published: 2009

ISBN: 978-0-901458-38-4

A catalogue record of this book is available from the British Library

Code: GMC/CON/0910

confidentiality 0910

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